Positive attitude to therapy that can lift the burden on hidden army of carers

As the Yorkshire Post launches its Christmas appeal in aid of young carers, Jill Fordham takes a look at one at one Leeds project aiming to turn lives around.

The seeds of the Positive Care Programme were sown during a chance meeting between friends around the kitchen table.

Su Mason was the driving force behind the project which aims to help sufferers of chronic illness and their carers to lead more fulfilling lives. The 54-year-old was previously joint head of the clinical trials research unit at The University of Leeds and had long been aware that following diagnosis, too often it’s a case of “here’s your pill and off you go”.

Su was sure there must be another way and having shared her ambition with friends, they decided to secure the services of a number of therapists and in 2004, the Leeds-based PCP was born.

During its early years, those involved in delivering the programme gave freely of their time. As the project became established, an approach was made to local GPs for referrals and with growing awareness, came support from philanthropic individuals and companies. The PCP then joined up with Leeds based charity Touchstone – an organisation intent on improving wellbeing through membership of its virtual Healthy Living Centre.

Through Touchstone they received funding from the Big Lottery which eventually made possible the appointment of a programme co-ordinator.

Each course is run over a 20-week period, during which time participants, whether they be those suffering from illness or their carers, enjoy a choice of complementary therapies, from reflexology to massage, group therapies and motivational workshops.

Such a scheme might sound like a luxury, but in the wake of statistics which show 17 million people in the UK suffer from a chronic condition, the knock-on effects for their wider family are well-documented. In Yorkshire alone there is a hidden army of 85,000 children who look after sick and disabled relatives and that figure is likely to soar amid continuing cuts to welfare.

This year, the Yorkshire Post’s Christmas appeal is in aid of all young carers across the region and as part of the campaign we are highlighting those projects which can make a real difference to people’s lives.

At PCP there are people like Ameena, who travelled the world, only to become imprisoned within her own home by the shackles of ill-health. Raised in Kenya, she returned to her origins in India for a marriage that was cut short when her husband died in a road accident. Rejected by his family, she returned to Kenya with her young son, but was forced from there as a British citizen, to move to the UK.

The difficulties of settling in a strange city were worsened by her suffering with long-term ill-health. Her chronic asthma induced anxiety, which took such a blow when in 1997 she was mugged in the street, that for three years she was unable to leave her bedroom.

“I was just too frightened,” she says. “My son, who was only 13 years old, he cared for me. He gave me my medication and when he came home from school I would open the window and throw the key to him so he could get in.”

A year later Ameena was diagnosed with a serious heart condition that forced her to spend months in hospital. She has since had a pacemaker fitted and she was referred to the PCP by her support worker. “At the time I wasn’t sure I wanted to join this group, but now I’m thinking that when it’s finished I will miss it. Just coming out and speaking to people has built my confidence and I’ve met some very nice friends. When I come here I meet people, but when I’m in the house I see nobody and there is no talking.”

According to PCP research, 38 per cent of those who took part in the scheme visited their GP less often, 32 per cent were able to reduce their medication and the project has also had a positive impact on their carers.

Looking after someone with a chronic illness can be exhausting and isolating and the free PCP programme was designed to ensure the benefits are felt long after the final workshop.

“This course has been extremely helpful to me and every day I practice everything I’ve done,” says Colin Vella, 31. “I soak it in like a sponge and will take away everything that I’ve learnt. I’ve been inspired by the art therapy group to practice art at home and also I enjoy writing and it has helped me move on from my past.”

Colin suffers with schizophrenia, as does his partner, for whom he cares, and who he met at a mental health drop-in centre. He was brought up in what he describes as a “verbally abusive family,” within which he knew nothing “but criticism and disappointment”.

His early years led to a life of drug and alcohol dependency in which he suffered some dreadful psychotic experiences which culminated in his diagnosis eight years ago, of schizophrenia.

“I was at the edge of despair and didn’t trust anyone,” he says, explaining that with the help of his GP he enrolled on a number of detox programmes and was referred to the PCP. “Without the course I could quite possibly have turned back to drink and drugs, but I have not and I thank everybody who’s helped me for that.”

Since its launch eight years ago, those involved at PCP have heard hundreds of similar stories and know the value their workshops can bring to individuals and their families.

Eveline Burness, joined PCP three years ago when her life was in turmoil following the loss of her mother and the breakdown of her marriage.

Her problems intensified when one evening she was attacked while walking home from her shift as a housekeeper on a ward at the Leeds General Infirmary. Eveline suffered fractures to both her arms, her collarbone and several ribs. While her physical injuries did eventually heal, as Eveline struggled to come to terms with all that had happened in her life, she spiralled into depression.

Encouraged by a friend to attend on of the PCP centres, she met Su, who invited her to join the programme. Like many of those who have passed through the PCP’s doors she was hesitant at first, but any early fears were soon allayed.

“It was lovely. I made some long lasting friendships and the therapies made me feel much better, and you got such a lovely welcome when you walked through the door. By the time it had finished I didn’t want to leave it and so decided to do a course towards a qualification in healing.”

The course lasted 12 months, since when she has almost completed a further two-year probationary period and will in two months be assessed by a panel, after which she hopes to qualify as a therapist. She is still in pain, but this she has learnt to manage, along with the many additional skills that the PCP has taught her, and others, in order to best improve their quality of life.

“Human beings are body, mind and spirit, and often it’s the spirit that gets ignored by conventional medicine,” says Su. “PCP is based on a holistic approach that recognises all three aspects need equal intention if an individual’s life is to be improved.

“The therapists we used have been so wonderful and giving, without them PCP wouldn’t have got off the ground and we wouldn’t be where we are today.”

However, while schemes like PCP have brought undoubted benefits to those suffering from illness and disability and those who care for them, for many the future is uncertain,

Following the planned shake-up of disability benefits and cuts to welfare funding it is feared more people will become increasingly reliant on relatives and unable to access vital services. PCP faces similar uncertainty over future funding. However, the organisers are optimistic of a reprieve. They have been here before and after all, positivity is the ethos in which they believe.

As part of the Yorkshire Post Christmas appeal in aid of young carers, tomorrow we are launching an online auction. The lots include a tour of appeal sponsors’ R&R’s ice cream factory, the use of a Porsche for the weekend courtesy of JCT 600 and a number of money can’t buy experiences, including a Tucano simulator flight at RAF Linton-on-Ouse, York.

The first 10 lots will be announced tomorrow and to bid go to www.yorkshirepost.com.

Donations can also be made online at www.justgiving.com/ypyoungcarers or by sending a cheque, made payable to LCF Young Carers to YP Young Carers Appeal, c/o Leeds Community Foundation, 51a St Paul’s Street, Leeds LS1 2TE.